Tag Archives: Multiple Sclerosis

I’ve managed to get by over the last two months plus since coming hat in hand to you kind folks, but now I’m back again. To recap quickly, in June 2014 I was diagnosed at Johns Hopkins’ neurology department in Baltimore with the Secondary Progressive form of Multiple Sclerosis. I can walk short distances using two canes before exhaustion overtakes me, then I need to sit a while to recuperate before continuing on. The diagnosing MS specialist said my history of symptoms gave him the belief that I probably had it for 10 to 15 years already. I agree with that. My mobility problems and the use of my right hand to perform tasks have deteriorated a great deal over the past seven or eight years, but the first signs of strange muscle events happening to me began in at least early 1999. I was blaming what I came to learn was multi-level disk degeneration until I went for a brain MRI last May, when the radiologist asked me if I had MS. To be potentially diagnosed with MS was the reason a neurologist at Hopkins had sent me for the brain MRI.

Although I’ve been going through the application process for months to receive SSI, two weeks ago I got a packet of forms to supplement the application with paperwork I submitted already,

and it took me until Wednesday evening before I had it all filled out, and managed to fax it to the Social Security Administration office in Harrisburg.

Harrisburg Social Security Administration offices

I’ve been getting food from a local church-run food bank, and I have enjoyed the generosity of some longtime friends recently, which has enabled me to remain caught up with bills and have a few incidentals, but I need to pay some bills each month, and I have a neurology appointment at Hopkins in Baltimore Monday. I believe I have at least nearly enough gasoline in my car to drive to Hopkins and back, but I need to pay for valet parking once I get there, as I must request a wheelchair with a transport aide to be brought to my car so I can get to the the neurology office in the Hopkins Outpatient Center.

Driving from West Philly to Hopkins in Baltimore has come to be an extreme challenge physically, and I plan to drive there off the main highways to allow myself to rest easier along the way. This has the added advantage of allowing me to avoid paying tolls. I expect to change my official residence to Pennsylvania soon, and hope to be able to start having follow-up neurology appointments in a well-regarded MS clinic in Philly, so this may be the final time I go to Hopkins for doctor appointments.

In addition to the money to pay for valet parking and several dollars of gas to attend my appointment Monday, I’ll need an additional $142 to pay my monthly car insurance and phone bill by the end of the week. This will keep me current on bills until the first of the month. I continue to keep my fingers crossed that my application for SSI will be approved any day, and that I won’t have a need to keep coming back to my kind friends for additional help. I know people are struggling even if they have decent paychecks coming in reliably.

The most direct method to make a donation to me is to send it to my Gmail address using PayPal. I can give you my Gmail address through a private message on Facebook or Twitter. One can also donate via PayPal from the link on my Authr page. I used to have a Go Fund Me page, too, but they seem to have deleted it due to inactivity.

If anyone wants to see more background on my predicament, I will direct you to previous blog posts over the past year. The living circumstances have changed, but the history holds true otherwise. My long bio is here. My first shorter ask here. More book information with the opportunity to purchase the ceramic sculpture Karen Sparks made for the cover here. Information on buying four-color prints of Karen’s artwork here. Background information on storyteller dolls and related premiums here. More recent blog asks here, here, and here.

Continued thanks to everyone who has contributed to me so far. It’s a humbling experience to ask and to receive as I have. And huge gratitude in advance to anyone helping me out for the first time.

I will focus on the crisis at hand. I have just over a hundred dollars in the bank and 21 in my pocket. Even though I can’t stand up long enough to cook, I have enough money to eat for nearly another couple of weeks if I spend every cent. I paid my phone bill for the month, but paid no October rent yet. I’ve been paying $250 a month to stay in my chair in this dining room in West Philly. The Johns Hopkins neurologist in Baltimore who diagnosed me with the secondary progressive form of Multiple Sclerosis in June said to take 2,000 IU of vitamin D per day, which is twice the suggested daily minimum. I take a whole-food style complex made from calcium instead of limestone that enriches bones rather than lining one’s arteries, is absorbed easily, and costs around $60 a month. I like to take additional supplements for my blood sugar, heart health, and a multi-vitamin-mineral pill, and even having cut back some, the dietary supplements still add up to around $200 a month. My auto insurance is paid-up till Jan 20.

I hope to retain my Maryland citizenship status and insurance, as I still consider myself just a visitor here in Philly. I recently sent in the form for a Maryland absentee ballot. I hope to avoid becoming entangled with local Pennsylvania governments from which I would need to disengage before moving back to Maryland. (Food stamps, license plates, etc. I just renewed my Md. driver’s license in August. The Johns Hopkins Hospital system is in my state-based Medicaid health insurance plan, even though I have to drive a good two hours-plus to get to it in Baltimore.)

Eight people live in this house now and there are frequent visitors, but the Internet usually holds out, and it’s good, considering how bizarre it all is. When I came up here from Maryland, I was told I needed to bring very little because there isn’t much space, and that is absolutely the case. I brought few clothes in a weekend bag, have my recliner chair with a motorized lift that I sit in all day and sleep in, have a narrow table in front of me with my laptop that swings away off to the side, and I have a tiny table to my right with three drawers in it. I have a few medical type things such as tape and iodine-based skin anti-bacterial in a bag in the closet, and I also have my coffee grinder, French press device, and that’s pretty much it. My 10 x 30-foot storage unit in Maryland costs $214 per month. If I get behind in the rent for my storage unit which is nearly five hours west of here, I’ll lose everything else I own, and all the Tori Amos items I carefully amassed since 1993 will evaporate as cleanly as the morning dew.

I’ll lose my large, meticulously-collected library of books and their bookshelves, hundreds of original mylar-sheathed magazines and newspaper clippings with Tori Amos interviews, seven boxes of file folders with specialized articles on many related subjects, document boxes with Tori Amos family history and genealogy documents (seriously, you have no idea), and many hundreds of sound recordings that I would need so as to be able to finish writing the book I researched full-time for over 10 years—I read more than 200 books for this project. In addition, I would lose my stereo, televisions, all of my other clothes, furniture, kitchen items, appliances, tools, at least many hundreds of CDs, LPs, various audio and video recordings not related to my book project; I’d lose every one of my historical family papers, and as many as 15 photo albums of family photos. Did I mention my stereo? My speakers may be from 1981, but they’re wonderful.

I will receive a modest inheritance from my aunt’s estate near the end of May once it’s been a year since she passed away. I won’t know its exact amount for another month or so when the estate sale has been carried out and the house has sold, but it should be enough to keep me living someplace—back in Maryland, I hope—where I can bring my research materials out of storage and available to me long enough to finish writing my book, which teaches how to have a deeper experience of music as a listener, composer, or performer, using the life, work, and family history of Tori Amos as examples. My multi-disciplinary approach uses Jungian analytical techniques alongside Stanislavskian acting skills in a manner which has never been proposed for use in the teaching of music on a mass scale. A few singer-teachers such as Liza Minnelli live this and teach something similar, but only to a small subset of performers. My book will also present much new Tori Amos biographical material and never-published family history, some of which I’m confident neither she nor anyone else in her family knows, so Tori people will want to read this book, which I see as my life’s work.

The original investor who asked me to write a book in the first place said he will take care of all publishing-related expenses once the book is written. It’s entirely possible that any day now thousands of dollars of missed pay will show up in my bank account from the Social Security Administration and I will begin receiving monthly payments from them after they approve me to receive disability, but I have no reason to believe this is on the verge of happening. Many report it can take three years or more before being approved, but one Hopkins neurologist told me having MS is a fast track to getting on disability, and I truthfully told the SSA “yes” when asked whether my disability will likely lead to my death, so I expect to be approved without needing to go through an appeal after an initial denial that 70% of applicants receive. Maybe I’m just stupid, but that’s what I believe.

If my research materials and other possessions are lost due to lack of payment for the storage unit before my aunt’s inheritance comes in I’ll be unable to finish writing my book, and the remainder of my life will probably consist of little more than waiting for the MS to overtake me. I have appointments for another brain MRI back at Hopkins in Baltimore on December 15 and a neurology appointment that afternoon in the same building, all of which is designed to be compared with the examinations and MRI from June when I was first diagnosed with MS. I have to say, any ongoing nerve deterioration seems slow, and the insanely expensive drug the neurologist put me on which my insurance pays all but $3 for seems to allow me to get around with much better speed, so in that sense I’ve actually improved since June, and I would reasonably expect to be able to finish writing my book if given the proper circumstances.

I know a few people will help me out this time as they have told me so. I’ll post more later as time moves me to the next crisis. If you are able and so inclined, please donate on Go Fund Me, or with PayPal via my Gmail address if you know it, where I will get every penny. (Go Fund Me takes a small cut.) It takes 3 – 5 days for PayPal to send money to my bank, and I need cash available soon to pay my storage fee on time before November 1st. If you want to donate on expectation of a premium such as a printed book or eBook down the road after I manage to finish writing it, you can go to my Authr page and donate there with PayPal after choosing a premium. More bio and other details can be found at the links to my blog pages which are given on that Authr page, but the current situation in which I find myself as described there changed at the end up May when I had my stuff put into storage and came to this dining room in West Philly. I realize this all sounds preposterous, but this is genuinely some of what I’ve been going through. Thank goodness my longtime friend was able to convince his household to allow him to fulfill his long-time promise to keep me from living on the street.

I remain humbled and grateful for the help I’ve received so far. Anyone wanting to lend me some cash toward getting me to June should contact me so we can discuss it. It takes about $800 a month to continue living here as I am in this chair, although winter heat bills have not been factored into that.